Stage 1 lobular breast cancer, anyone no treatment after surgery?

I am six months out now from my lumpectomy, (Stage 1a, grade b ER/PR + HER2- with no lymph node involvement and good margins), did 5 sessions of targeted radiation and chose not to go on AI's. I met with the oncologist who ran genetic factors, etc. through whatever they use to forecast recurrence, and the AI's had a "1% overall reduction of risk" were the exact words. Not worth it to me, I am willing to assume the risk. Thank you everyone who has replied to my original post. So appreciated!!!

I am considering surgery only, but have only found a few people that took that route! Just had a lumpectomy, mucinous carcinoma, ER+, PR-, HER2-, histologic grade I. 2.0 cm. I would really appreciate connecting with others who have chosen to not have further treatment. I'm getting a second opinion, because my first oncologist wants to do it all; chemo, radiation, and Endocrine therapy.

As previously mentioned, I had the same thought process as you. In fact a highly respected oncologist told me there is a significant movement in the cancer field that they may be over treating early stage cancers. Actually this comment made it even more confusing for me! I googled this and there is quite a bit out there. Anyway, as I was walking out, after stating I was declining AI's due to my low risk factors, he said, "I think you should do one or the other". He was referring to radiation or AI's. I opted for the 5 radiation sessions, used mepitel with extremely little side effects and haven't looked back. No AI's and I have such a great quality of life! That was 6 months ago and I have my next scan the end of September. I have a great feeling about it! Good luck with your decision.

I had the same diagnosis with the exception I had 2.5. Not needed chemo, radiation was 5 days only. This was done to kill any leftover cells. I strongly suggest that you do the radiation. Go online to read Dr. Bodia 30-year research about our cancer. I met him. Wonderful man. He created the pink ribbon for Cancer. Hope this helps. He applauded for not taking any drugs.

I looked for Dr. Bodia on Google and could not find anything. Would love to look at his research. I did find info on a Dr. named Dr. Bardia, who is a breast cancer specialist. Is this who you are referring to? If not, if you don't mind posting a link I would sincerely appreciate it!!!

You should have the Oncotype DX to see if you need chemo.
I had 30 radiation sessions after a lumpectomy which were not unpleasant. Stage 1b and I will not have endocrine therapy.I am 77 and have used HRT for 25 years.I intend to continue with it as the advantages in spite of the breast cancer are formidable; no osteoporosis ,no Alzeimer’s and no heart disease.My 2 older sisters have both of these ailments unfortunately.

Dr ernie bodai Sorry I did not give you the full info. He is amazing

I had LCIS - which is pre-cancer zero. My lifetime breast score was 40% in either breast; and only known to be in my right. So I had a 60% chance of not having invasive develop. I was not up for the other treatment plans presented beyond surgery. These were high risk (which you are not) biannual monitoring, using MRIs and mammograms. I did not want to wait every six months for a diagnosis; way too much stress and I don't think I would live my best life. I was not keen on 5 to 10 years of low dose chemo prevention either so I went the surgical route and he had a prophylactic DMX. What I did learn was that lobular carcinoma is sneaky; it is hard to visualize (MRI do well though) unless it is in a more advanced state. I did not want to wait for a higher grade tumor to develop - and then need to have radiation, higher dose, chemo. It's a hard decision - but your completely your choice. I found it useful to make a pro and con list of alternative treatments. This helped me take some of the emotion out of the initial decision and I am happy with my choice; I am six weeks out DMX. Good luck with your decision!

I like your odds wyo. I would make the same decision. In fact, I did. I had lumpectomy in February, radiation then Tamoxifen for 10 weeks. I stopped the Tamoxifen and am still having side effects 2 months later. I read it has a 72 hr half life, then I read it has a 7 day half life. My follow up mammogram from the surgery shows clear of cancer - six months after surgery. Will have another mammo in another 6 months. I am obviously super sensitive to any hormone blockers and will not try another even if cancer returns. If it does I choose palliative care. Of course, I'm 86. Some younger would choose more treatment.

Hello Wyowyld:

Have you tried googling something like "invasive lobular carcinoma grade 1 risk of recurrence"? The articles and info that results from the search may be helpful.

I am metastatic ILC triple negative. I was first diagnosed as stage 3B despite regular mammos.

It's helpful to understand how ILC grows--by way of thin strands or webs that are difficult to image because they are so tiny.

Another reason is that in a PET-CT scan, the glucose based tracer (FDG) does not stick to ILC so it is not caught until the strands meet up and form a tumor. By then it's too late--there can a tumor all of a sudden.

Currently a new tracer called FAPi (Fibroblast Activation Protein inhibitor) is in third stage clinical trials at a few cancer centers (UCLA, UCSF and Mayo, maybe others) and the research results are very promising. As I understand it, the FAPi tracer sticks to the fibroblasts on the outside of cancer cells in difficult-to-image cancers such as ILC and others cancers.

There is a growing body of research on ILC. If you are hormone positive and/or HER2 positive you have many more treatment options should you choose that option.

However, the ASCO and NCCN treatment guidelines, the treatment 'bible' for oncologists, tends to treat ILC like other breast cancers. But ILC is not the same as other breast cancers as you will learn from medical journal articles.

My message is to educate yourself, read about ILC--not only from messages like these--but from medical journal articles, current articles since 2020. Yes, some articles contain chemistry and statistics--you can skip that if those matters are not your thing. Read the abstract (summary) and the conclusions section. Write down your questions for your doctor. Ask lots of questions. Consider obtaining a second opinion. Take control of your care. Be a self-advocate for whatever you decide. You hold the power of decision. Your body, your decision. You can do all of these things in a positive, open partnership with your oncologist.

Here's wishing you the very best!